Stuck

I am sure that at some point in our lives, we all experience feelings of being stuck, or captured in a place we really don't want to be. I am stuck in that place right now, and finding a way out is easier said than done. Right now I am tired of fighting, just plain tired. It is hard to keep up hope, when there is very little to hope for. Sometimes I feel as if all the work I do to keep the MD from progressing to much before the cure or treatment is found, is all in vain. I know that I cannot say that it is in vain, we don't know that a cure won't be found tomorrow, but I do know that right now that does not appear to be the case. A lot of research is being done to find cures and treatments for MD, but the truth is that I no longer see a realistic chance of a cure or treatment before it is to late for me. I am not an expert, but I have heard from several sources that even if a cure is found, it will take 5 - 10 years before it will be accessible. 5-10 years is a long time, especially when you don't have a starting point.

I still keep fighting, as I do have a lot to fight for, I am, in many ways a very lucky person, I have a husband and family that loves me, great friends, a nice house, and probably the best dog in the world. There are people out there, who would kill for what I have, so I probably should be more thankful. I am not, MD, even when you have people to talk to, is a very lonely disease. You are the only one who knows what is going on with your body, and no matter how hard or often I try to share my fears with people, I don't think that anyone will ever truly understand.

We all deal with our disabilities in different ways, some better than other. I have found that faith to some extent is a common factor amongst the people who seem to have come to terms with their disease. My search has brought me a long way, and at times I feel peace when praying, but somehow, my brain is still playing tricks on me. I have a hard time getting rid of the "human" approach to God and Jesus. I tend to project human attributes on to God, and make him less than he really is. The concept of omniscience, and that God can do anything he wants still hasn't quite made it through that hard scull of mine. It is also hard for me to understand that God is not punishing me, but has a plan for me, I hate not having any control over where I go. Ok ok ok no body has any control, I know, and I should not feel special, so I will try not to. However, we all have choices to make in life, and those choices give us some kind of control. What I hate is that at times I feel as if I have been robbed of my choices, and thereby also any kind of control. I know it is nonsense, I have a lot of choices to make, but I don't have the choices I want, I really miss my independence, my ability to just do whatever I want without depending on other people.

I am perfectly aware that I can complain about my lost independence from now on and until the end of the world. I also know that I do have some choices and possibilities, that could give me back some of my independence, but for some odd and irrational reason, my brain wants it all or nothing, compromise is not an option.

I suppose that all I can do, is to mosey on while I hang on to the little ray of hope I need to have in my heart, no matter how faint it is.

Peace Out

P
Contact email keepinghopejourney@gmail.com

Inspiration

Lately I seem to have lacked a little in the inspirational department, it is not for lack of being around intelligent and inspirational people, but rather because we have been really busy since we got back from Denmark. We have literally not had a day to just sit down and breathe until today. I did write a long blog last week, only to delete it again because I got mad at God!!! I felt inspired that day, and the blog dealt with how, when I look back, I can see that God has played an active part in my life for years, and how I just kept ignoring all the signs he sent me.

A friend of mine wrote a blog on signs earlier today and I determined that I should try to recreate at least the spirit of last week's blog, who knows, maybe her blog from today was a sign for me to get going.....

Tom and I have, as I have mentioned before been attending church at a church called Centerpoint for the past few months. I think that Centerpoint is the ultimate example of how my human free will, and the will of God can get into wrestling matches only to always have God's will come out ahead. It is called Irresistible Grace I understand that now. When we are at Centerpoint I just feel at home, it is a feeling that is hard to express, it is nothing big and major that makes me want to jump for joy, but rather a deep warm feeling of belonging and contentment. I know God's presence is the reason for that feeling, but I think that he is using the other members to show me how he can be present in human beings. Who knows? I can only hope that one day I will find what they have, and maybe people will be able to sense God's presence in me.

Let me return to the so called signs God has been throwing at me. I am pretty sure God's purpose for me is to be here in Tallahassee, I probably chose the path myself, believing it would lead one way only to end up somewhere totally unexpected. I think of the life Gos has planned for us like a maze with a short route, a medium route, and a long and winding road all of which lead to the center, the place God wants you to be. God is not mean, nor does he play tricks, but he did provide us with free will and through our choices in life, we end up taking one of the previously mentioned roads. Most of us are probably taking the long and winding road, and at times I believe it is probably the most scenic route.

Has my road been scenic? I am not sure, it has most definitely been colorful, but at times also scenic. I hate my MD and what it does to me, and I don't think that will ever change, I will go down fighting. Unfortunately I think that stubbornness could be causing me to take the ugly detour at times. I don't knowingly choose the ugly detour, and I am sure I could have avoided some of them had I just learned the lessons I should have learned from them.

At church today, the sermon was based on ACTs 17:23, the preacher spoke about how we all search for something, and that we are restless. He said that as long as we are restless it will be hard for us to completely live the life we are meant to live as Christians. He said that what we need to do is to let Christ be in charge, and by doing that we will get rid of the restlessness. I am definitely still restless, and keep searching for answers in all the wrong places.

My point with this blog is that I now understand the concept of predestination and irresistible grace. A seed was planted somewhere in me years and years ago, I kept throwing Round Up at it, but the pesky little thing would not go away, quite the opposite. God kept feeding it Miracle Grow and finally, it ended up taking over, to a point where I could no longer ignore the existence of God in my life. I still don't know what the implications will be, I guess only time will tell. So far I am only a rookie blindly trying to find my way to first base. I can do nothing to deserve God's Grace and I should feel comfort in that, I want to feel comfort in it. But it is just so hard for me to understand and accept that no matter what I do, my MD will only be better or go away if He wishes for it to go away, you don't strike bargains with God. I also know that I have so much more I can offer besides trying to fight the MD, but for some reason I don't care that I am a good teacher, cook, wife, as long as I am not healthy. I am sorry I can't do better.


P


Contact email keepinghopejourney@gmail.com